17 year old woman with narcolepsy refused medication funding by NHS England

Posted on: 26th April 2016

On Wednesday 4th May 2016, the High Court will consider an application by the father of a child for judicial review of a decision by NHS England to refuse funding for a drug Sodium Oxybate (brand name Xyrem®) used to treat narcolepsy. The Court will be asked to intervene to require NHS England to fund the only treatment which has a real prospect of reducing the symptoms of this devastating illness.

The Claimant, X, is a 17 year old woman who has narcolepsy and cataplexy, a serious neurological condition causing disruption to night-time sleep, excessive daytime sleepiness, hypnogogic hallucinations and cataplexy.

Since 2012 the Claimant had been prescribed a range of medications to treat her condition including stimulants to help stay awake during the day, other drugs to assist with night-time sleep and further drugs for cataplexy. Unfortunately none of these were effective and in some cases the drugs caused negative side effects.

In May 2014 the Claimant’s NHS Consultant recommended she try Sodium Oxybate, which, works differently to her existing medications. It induces deep and prolonged night time sleep which consequently addresses the problem of fractured night time sleep and reduces excessive daytime tiredness. It also alleviates cataplexy and reduces or diminishes the hallucinations. The European Federation of Neurological Societies guidelines on the management of narcolepsy confirms that Sodium Oxybate is the most appropriate treatment for narcolepsy with cataplexy in adults and it also achieves life-changing benefits in children.

In June 2014 X’s Consultant applied for funding for NHS approval for funding of Sodium Oxybate. Funding for a 3 month trial initially is currently sought, the cost of which has been calculated at about £2,000.

After delay while different NHS bodies disputed responsibility, in May 2015 NHS England refused the funding application on the basis that the Claimant is representative of a group of patients who have a similar condition and who could potentially all request the same treatment. NHS England therefore considered the applicant’s request to be for a service development rather than an individual funding request.

The Claimant commenced proceedings for judicial review to challenge the refusal as a service development. Permission was granted by the court on 13th November 2015 and NHS England agreed to review their decision. However, they then decided to continue to refuse funding for different reasons – namely that the Claimant had not demonstrated that she meets the ‘exceptionality’ criteria. It is this decision that will be challenged in court on 4th May 2016.

NHS England has misinterpreted and misapplied its policy governing such individual funding requests and ought to have accepted that the Claimant meets the exceptionality requirement; and/or

The refusal of funding unlawfully discriminated against the Claimant by comparison with the position for (1) children with narcolepsy due to the 2009 pandemic swine flu vaccine (who are funded for this drug under a scheme established by the Department of Health, yet resourced with NHS staff, premises & equipment) and (2) adults with narcolepsy, many of whom have NHS funding for this drug; and/or

NHS England failed to have regard to the need to safeguard and promote the Claimant’s welfare as a child (as required by s.11 of the Children Act 2004) and breached the obligation to treat her bests interests as a primary consideration (as required by Article 3 of the UN Convention on the Rights of the Child).

The Claimant’s father comments:

“At a time in our daughter’s life, with important exams which will define her life in the future – for a girl with her whole life in front of her and for a girl who has ambitions for her future, this case has huge implications. The impact of narcolepsy and cataplexy on her is devastating and the availability of Sodium Oxybate would have a massive positive impact on her.”

“This Judicial Review is extremely important for people with narcolepsy who are under the care of NHS England. Current medical interventions are often too late and ineffective, resulting in additional educational and social implications for the impacted child and family. There is no logical reasoning behind the provision of this medication to some but not all and we consider the refusal of treatment to be discriminatory and not in the best interests of the child’s welfare.”

The case has potential implications for the legal rights of children in England to access NHS funding for medication recommended by their treating doctors, especially children with narcolepsy.

The High Court has granted the Claimant and her family anonymity (Order dated 1st September 2015). However the family are willing to speak to journalists on condition the order of the court as to anonymity is complied with. Contact number 07880 706711

Narcolepsy is a rare and incurable autoimmune sleep disorder caused by the destruction of the part of the brain that produces hypocretin, a peptide that regulates sleep. The dysregulation of hypocretin can lead to a range of serious symptoms including excessive daytime sleepiness, fragmented sleep, cataplexy (sudden collapses), frightening hallucinations,“micro-sleeps” during everyday activities, weight gain and sleep paralysis. It is estimated one in about 2,000 people in the UK have narcolepsy, approx. 31,000 people.

Ian Wise QC and Stephen Broach of Monckton Chambers are instructed by Hodge Jones & Allen LLP for the Claimant with funding provided by the Legal Aid Agency.

Hodge Jones and Allen was founded in 1977 in Camden and has over 220 staff based in Euston NW1. The firm’s team of specialists – Personal Injury, Medical Negligence, Industrial Disease, Civil Liberties, Criminal Defence, Court of Protection, Dispute Resolution, Wills & Probate, Employment, Family Law, Military Claims, Serious Fraud and Social Housing.

More than 6,000 people have so far signed an online petition started by Narcolepsy UK about the NHS denying medication for people with narcolepsy.

Press contacts

If you are a member of the press or wider media and have an enquiry, please contact Kerry Jack, Lizzie Hannaway or Nicola Pearson at Black Letter Communications